Episode Transcript
Cheryl: [00:00:00] Welcome to the podcast from Cambridge University Medical Education Group, or CUMEG for short, this is a podcast from the university of Cambridge Clinical School. Focusing on medical education, we will be touching on a range of topics that medical educators are dealing with. I'm your host, Cheryl France, Head of CUMEG.
[00:00:34] Today, I would like to introduce Dr. Anna Spathis, assistant professor in palliative medicine and lead consultant for the Cambridge Breathlessness Intervention Service. Today, we will be discussing non-drug centered approaches to palliative care and how best to equip the doctors of our future to deal with death and dying.
[00:00:57] Please note that this episode contains a discussion about end of life care, which some listeners may find distressing. Welcome, Anna, it's wonderful to have you with us today.
[00:01:07] Anna: Thank you for having me.
[00:01:09] Cheryl: I would really like it if you'd be kind enough to tell us more about your background and what it means to be a clinical academic in palliative medicine.
[00:01:21] Anna: I started off in hospital medicine. I've taken a really meandering course. I moved from hospital medicine into general practice, and then some somebody said to me I think you'd love palliative medicine. So I gave it a try and they were completely right. And palliative medicine in some ways is between hospital medicine and general practice. It uses skills from both of them.
[00:01:46] So I was a consultant, mostly in the NHS for about a decade. I worked in a children's hospice. I worked most of the time with adults, particularly focusing on the management of breathlessness and fatigue. And then really late on, I moved into academia and in fact, finished an MD (like a PhD) at around the age of 50 and was lucky enough to be able to move into a clinical academic job, which I've been doing over the last few years.
[00:02:23] And I feel very privileged in this role because, as well as the clinical work, which is at the core of everything; there's the teaching; there's the research; and that trio, they all inform each other. And I really feel that they together are greater than the sum of the individual parts. So, for example, working clinically with people with breathlessness, we developed an educational tool for health professionals caring for breathless people. And then, now we've just got quite a lot of funding to rollout that tool for use in primary care, so that many more people can access support with managing their breathlessness. And so, I think the summary is that I'm in a job that I'm really enjoying and feel very lucky to have.
[00:03:10] Cheryl: That comes across with what you're saying. It does sound really interesting as well and the breathlessness aspect is quite interesting as well. Could you tell us a bit about that role? Because you said you've been doing that before moving into palliative care or are you doing them simultaneously?
[00:03:27] Anna: So palliative care is about improving people's quality of life when they have advanced and often progressing illnesses. And part of that is about improving the management of symptoms and breathlessness is one of the most frightening and awful symptoms for people to experience. I often think of a hierarchy of symptoms when people are breathless and in pain, for example, it's the breathlessness that they notice. And unfortunately, other than drugs to treat the underlying condition causing the breathlessness, drug treatments are not that effective for breathlessness. And so, it's a complex symptom to manage. And my pioneering colleague, Dr Sarah Booth, set up the first symptom focused breathlessness service in the world back in about 2003. It's been a great pleasure working in that service myself since about 2011.
[00:04:29] Cheryl: That's all very recent. You would think something like this would have been around for years, but it's quite scary, as you say, breathlessness you can imagine that is quite a scary symptom and wonderful that you've now got something that will help patients and individuals experiencing it.
[00:04:49] Anna: I mean the best treatment for breathlessness is, of course, medically managing the underlying condition like asthma or COPD, as well as possible. But the fact is that quite often, even with the best medical management, people are left with symptoms that really impact on their quality of life. And that's what we try to support people with, to self-manage when they're at home living with the breathlessness day to day.
[00:05:18] Cheryl: That's really interesting. And I imagine the pandemic has had quite an increase in individuals having these sorts of issues as well.
[00:05:27] Anna: Certainly, COVID made breathlessness a headline. Clearly COVID related breathlessness usually resolves and people need the appropriate supportive care for the COVID, which may well be in hospital if they're feeling breathless. But as we all know, long COVID does exist and many people are left with these symptoms such as breathlessness fatigue for long periods of time. And indeed, our service, although we're embedded within palliative care, we've gone a little bit off-piste and we have, over the last couple of years, being caring for many people with COVID, at least until the point where the long COVID services were set up.
[00:06:10] Cheryl: Oh, that's good. That's good that those services were available and that the knowledge was there at a time that people needed it the most. So, that's wonderful that you were able to provide that. I think I'd like to get back to talking about palliative medicine if that's okay. I think it's a really important component of medicine. but often a topic that people just don't want to talk about. And I get it, because I think a lot of people feel that if you start talking about palliative medicine, end of life, that has negative connotations.
Personally, I think it's really important that people do have these discussions and I'm sure this is something that you've come across quite a bit, not only in teaching students, but also in speaking with patients. So, in terms of teaching our future doctors on how best to approach this incredibly emotional topic, can you tell us more about how you do this?
[00:07:10] Anna: Now, this is such an important question and I'm absolutely with you about the value of open communication, when people want it. And I think we have to remember that the evidence is about a third of people really would rather not talk and we must respect that, but there are many more people who wouldn't initiate open conversations, but given a safe space to be able to talk with people really would value it and benefit from it as well.
[00:07:44] So, thinking about how to engage people to talk and how to train the future doctors to be able to have these conversations. It can be quite helpful to think about why these conversations don't happen. And interestingly, most of the barriers actually relate to health professionals' barriers, rather than patients' barriers.
So, health professionals don't raise the conversation because there's often, particularly with non-malignant disease, non-cancer, prognostic uncertainty. So how does one know when it's the right time to have these conversations? Health professionals are super busy, everyone knows that. It's also not clear in these big teams who is responsible for having these conversations. And then, of course, there's the stigma and health professionals are out there to try to make their patients feel better. And there's a worry, an understandable worry, that you're going to reduce hope or upset people talking about these things. But the fact is that as we were saying, most people do want to talk.
And the only barrier from the perspective of patients is that they are sometimes afraid to bring it up. Cause they, it seems to be that they worry often that health professionals are going to feel that they're being told that they failed. So, it's almost the patients are protecting health professionals.
[00:09:22] So once one realizes that the barriers are often on the health professional side, it's much easier to try to move things forward. And the benefits of having these conversations, the evidence is the benefits are huge. So, patients feel more in control. Let's remember that in palliative care, we're fundamentally looking after people who have incurable disease that may well be progressing. They feel out of control because the disease may be out of control, but we, as health professionals, can support patients to get a sense of control back. There are still things that they can take control over. For example, how they are cared for? What sort of treatments they want or they don't want? Who looks after them and where? And you can only work those things out with open conversations.
And just as an anecdote to share with you, I remember very well a person I was looking after many years ago, who was in fact, a nurse herself who was dying at a young age, from a rare cancer. And she could not bear to think about what was happening to her, didn't want to talk. Of course, we didn't push, but for various reasons, just in the last few days of life, she asked a direct question: am I near the end of my life? And that opened up a big conversation; and she said, I get it. Please keep me alive. Please give me those blood transfusions for a few more days. I've got a lot to do. And she essentially brought her family together. There'd been lots of, frictions and difficulties, and she brought everyone onto the same page.
[00:11:12] Anna: She did so much, often by phone, over those days. And she said to me just before she died, you know, it's so strange, but it was only when I truly understood that I was dying, that I began to feel I was living. So, there's this sense that by understanding our mortality, by being able to do what we wanted to and take control that people can actually feel alive. And a big principle of positive care, is that is... here's a quote, which I think summarizes this: "talking about dying doesn't bring it any closer, it's about making plans so that you can make the very best of living". So, it's about helping people live well until the point where they die.
[00:12:00] Cheryl: Wow. I really liked that quote and that story that you've just told is... I have chills just thinking about it, but also it makes you think actually, why can't we all consider this perhaps, and maybe we do need to live a bit more in the present, rather than letting days go by as it were.
[00:12:22] Anna: It's certainly true. And it's one of the many joys and privileges of working in healthcare is that I do believe we learn something from every single person who we extensively are caring for. So, it very much is a two-way thing. And people coping with adversity, it's very humbling to witness people's resilience and how they can make sense of life.
[00:12:51] Cheryl: Yeah, I can imagine. I can imagine. And that story that you just said, how sad that took her last couple of days in life to get family back on the same page when they potentially could have had years of doing that but it's through having these conversations. And I want to take you back to the beginning of what you said and that a third of people won't talk about it at all, which is quite interesting. but also, more that the barrier can be healthcare professionals, not engaging in that conversation. As you say, there's lots of barriers as to why people wouldn't want to engage with conversation, but good that it does happen and that there are now tools in which people can consider that.
[00:13:36] Anna: And I think you've brought up an important point of saying tools, how do we get over those barriers with health professionals sometimes not wanting to go ahead and trying to create that space to have these open conversations. And I think that a key way of engaging ourselves as health professionals and engaging people living with long-term and incurable conditions is to think of what the benefits might be, that taking control, avoiding crises.
If you've talked, you can plan to try to prevent that next emergency admission. And another key way that I teach student doctors to engage their patients is to talk in terms of explain to patients that if we talk about this now, as well as giving you control, as well as trying to avoid crises, it'll avoid burdening your family, with having to feel that they're making decisions on your behalf, if at some future point you may not be able to make them yourself. And in my experience, people really engage with that because they really don't want their family to be on the spot and having to get involved in difficult conversations later on.
So, all of these ways, we can use to try to engage ourselves and our patients in these open conversations, and then, we do teach lots of practical tips. So, one of my favourite ones, which actually I learned from paediatric palliative care where there's so much prognostic uncertainty, is a process called parallel planning. Where essentially, you're saying we don't know what's going to happen, it's very difficult for us to predict. Some people find it helpful if we make a whole series of plans for all the 'what ifs' and then, most of them won't be used and we can shelve those plans, but it means we've got a plan for whatever might emerge. So, that's another of the tools that we might use.
[00:15:41] Cheryl: And that's a really good idea. Isn't it? To have lots of plans in place and particularly for families to be able to utilize those at a time where emotionally it's really, really difficult. So, that makes perfect sense.
I think I'd like to go back and talk about palliative care in terms of options. You've talked about options and making plans and that sort of thing. But what about the options in terms of medical approaches, in terms of taking medicines or using other approaches that do not use drugs? Could you tell us a bit more about those two approaches and what people's options may be?
[00:16:27] Anna: So, thinking in the context of palliative care and symptom control, many symptoms, for example, pain; nausea; and vomiting, drug approaches can be highly effective and, indeed, are evidence-based. But there are other symptoms like breathlessness; fatigue; insomnia; anxiety, which are genuinely better managed by using non-pharmacological or non-drug approaches. And, indeed, the evidence for using drugs for those symptoms is thin to say the least. There is a little bit of evidence, but the stronger evidence is for non-drug approaches.
Now, I want to be clear here, I'm not talking about alternative or complementary therapies. I think that's another topic and certainly not my domain. Some people do find them helpful; the evidence-base can be quite thin.
[00:17:30] What I am talking about is the types of approaches that physiotherapists, occupational therapists, psychologists, a range of allied health professions would use. Cognitive and behavioural approaches which do have a good evidence base and, as you can imagine, are a whole lot safer than using drugs. And because I work in the field of breathlessness, which, and breathlessness is like twinned with anxiety, as one can imagine and also is very much associated with fatigue. I have personally developed quite an interest in non-pharmacological approaches and in helping to build the evidence-base, which already exists, but needs strengthening around those approaches.
[00:18:21] Cheryl: That's really interesting. And it goes back to the beginning when you were saying how important those approaches have been, we've talked about it being useful in the pandemic, but also for end-of-life care. So that's really helpful to understand those differences and what is available to individuals. I think that makes it easier for people to understand that you don't always have to go with the medical, medicine side of things and there are other options.
[00:18:47] Anna: So conventionally, and I am overstating things a bit here, but doctors are taught to take a diseased focused approach and then to work out which drug may be the best. And I'm all for that, and that certainly has a place, but we do need to remember other approaches. So, for example, for breathlessness, the evidence around people gradually building up activity and making themselves fitter, which in turn improves the oxidative metabolism in their muscles, for example, and therefore reduces their breathlessness because they're using the oxygen more efficiently. That evidence-base is much stronger than many drug approaches. So, it's a bit of a hobby horse of mine to make sure that the student doctors that we're training are aware of the whole range of options.
[00:19:43] Cheryl: I think that's really empowering for the doctors as well as patients to hear this sort of approach and that there are other options and alternatives. I think from my perspective, this has been really interesting. It's an emotional topic that, that people can find very difficult to get their head around and to talk about. I think your role so important and so empowering, as I've just said, to patients. From everything we've talked about today, could you give us your main takeaway points for listeners?
[00:20:20] Anna: A key point I want to make, and this is very relevant for student doctors who may feel that palliative care is depressing and sad and difficult. We have a role as educators in palliative care to inspire the next generation of doctors, that this is a really valuable form of medicine. This quote: "Death is not a failure, but an opportunity to practice a form of professional care that is as old as medicine and as gratifying as any other of the services that we offer". I think that quote, that was from Hansen-Flaschen, really encapsulates it.
And I want people to understand that palliative care is positive. It's proactive. It's really good detailed clinical medicine where you often don't do every investigation because it may, not feel appropriate for a patient. And you actually have to work out with good old fashioned clinical acumen, what the cause of the symptoms might be and how best to approach it. So, I'm trying to help people understand the merits and the privilege of practicing palliative care.
[00:21:37] Another point I want to make is just... it's that word control, the importance of giving our patients control and actually also the importance of giving the future generations of health professionals a sense of confidence and control. When for them, they may be fearful that providing palliative care will be difficult, messy, and uncontrolled. So, empowering people with tools is a really important part of what we do.
And I think the final point I want to make is just to very gently, challenge the stereotype of doctors only dealing with drugs. Again, I am overstating things a little bit, and that many non-pharmacological cognitive and behavioural approaches have a good evidence-base around them and are safe. And my work, both in clinical and academic terms, is about how can we engage health professionals to feel confident in providing that type of care for their patients.
[00:22:50] Cheryl: Yeah. I agree. I think that sounds really important. All three of your points were really useful to sum up today. So, thank you for that. I think it's good to understand there's other approaches to care that are safe and effective. I love the fact that you've talked about patients taking control, as well as health professionals taking control, and it's a positive aspect of palliative care. And palliative care is so valuable for everybody, for very positive thinking moving forward. And if health professionals and individuals can take that message, I think it's wonderful.
Thank you once again, Dr Anna Spathis, you have been such an inspiring person to speak to, and I really am grateful for your time today. Thank you.
[00:23:37] Anna: That's very kind of you and thank you very much for inviting me.
[00:23:41] Cheryl: Dr Anna Spathis, thank you once again for such an interesting discussion. If listeners are interested in learning more about how to teach palliative care, please contact us via the CUMEG website. You will also find our other podcasts on the website at www.CUMEG.cam.ac.uk, or look for us wherever you get your podcasts.
[00:24:18] We are grateful to you, our listeners, thank you for taking the time out of your busy schedules to listen to us today. If you would like to hear more from our series, please like, and subscribe to our podcast.
Join us next time where we’ll be speaking to Dr Elizabeth Fistein about ethics and law in clinical medicine. We look forward to you joining us next time.
